Thursday, January 24, 2013

I think it is time for an update.

We had a pretty busy December and a great Christmas. Kids got plenty of gifts and they are already striving to be on the "good list" because they believe this will get them better gifts at Christmas time again. There is nothing super wonderful and new going on, I am pretty much just going to bomb this post with a ton of pictures.

There are a few things I will talk about...Baby Hannah is growing way to fast. She is 8 months old now. During this past month she learned how to get into a sitting position on her own, then a few days later she started crawling, then the very next day she started pulling up to a standing position. She did all this with 10 days. About a week ago we got the babbling "ba-ba" and about to days ago she added "ma-ma" I'm introducing more and more solid foods to her and trying not to be paranoid that she will chock, aspirate, and get a brain injury...kinda traumatised about this...she is working hard at falling and hitting her head as often as she can already. I think she needs a helmet. We are still breastfeeding (well pumping and bottle feeding) and it is going well.

I am motivating myself to FINALLY getting serious about potty training Andrew. I think he is finally understanding and is getting better about getting his pants off. He struggles, but I think he can at least get the pee thing down for now. He has even learned to stand up and pee when he goes. He has yet to ever tell me he pooped or asked to go on the potty..this is why I have been afraid to do this whole potty training thing. He is 3 1/2 and long over due. I really believe Andrew has some issues that may need more attention and I don't feel the school is addressing them. I could be wrong. They test him and tell me for the most part he is "within normal range" and don't feel he needs any kind of therapy.  I try not to compare, but I don't have much else to go off of. I think that is abnormal that he can not dress or undress himself. He will not even take off his shoes or socks on his own or put them on. He just tells me "I can't". I've discussed this with his teacher at school and she tells me he DOES at school. He can't open things on his own. He tries, but can't even tear open things that have the little slit that you pull open. He can't put his own straw in his cup. He still refuses nearly all food that is not candy, chips, or peanut butter sandwiches. Occasionally we can get him to eat pizza...he basically eats the crust. I still have him on about 3 pediasures a  day just to keep him where he is at. He is nothing but skin and bones. Has no meat on him at all. As a big girl it is just unnatural to see a child that skinny. He looks sickly to me. He is in the 20th percentile I think in weight. He is around 29lbs. He has actually lost weight at one point he was 31 pounds. I think he has a sensory issue. I stopped making him eat anything besides peanut butter months ago after his 3 year old check up because the MD told me not to force him to eat. I still offered him food though. I had no bread to feed him his breakfast, lunch, and dinner of peanut butter sandwiches a few weeks ago so I broke out the old high chair and made him sit in it with a plate of food on it. Green beans, a few tiny pieces of steak, and a baked sweet potato. He chocked down some green beans by me forcing him to put it in his mouth and feeding him (he won't use a spoon or a fork either) the meat made him gag literally. He chewed it and was pocketing in his cheeks. I told him to swallow and he tried and then puked all over the table. Seriously! I am in the process of getting an appointment to see a developmental pediatrician.

Ava is really catching on at school. She had a rocky start and was falling behind and needed a little extra help working on sight words, but is now where she should be. She was diagnosed with hypothyroidism several months ago and now takes synthroid and it seems that it has helped. She has stopped gaining weight and doesn't tell me she is tired all the time like she used to. She does surprisingly well getting up for school in the morning too.

Jacob is doing well considering his issues. No real improvement in cognitive development or movement. The nissen fundoplication he had in July has CHANGED OUR LIVES. He is gaining weight and not sick anymore. He has had phenol and botox twice since May and his tone is SO GOOD now. He is off all his meds except for his seizure meds and as needed dose of baclophen. He goes to school with Andrew Monday - Friday, but they are in different classes. He is so awake now compared to the drugged state he was in all the time from the medications. He is happy and so alert. He is still over the moon for Mickey Mouse Club House and pretty much watches it all day long. I'm still hoping we start seeing some new improvements in him.

I have been out of work since Hannah was born. It was a very hard adjustment for me to be home all the time and going to down to 1 income. We have made it work so far. We do our best to get the kids out and about without spending a ton of money and are always looking for free and cheap things to do. I have a list about 3 miles longs of needs and wants for income tax time. LOL We have so many things to fix at home including out septic issues that a wheel chair van is not going to to be on the table this year. :-(

2012 Family Christmas picture Celebration, FL

playing in the "snow"
My babies

Daddy and his babies


Dancing in the snow

spitting at Daddy
Jacob got a new seat for his gait trainer. He was rather happy about it.

1st time my baby took steps in months with the new seat.

Jacob's special tomato stroller

I started making bows and this is one I made to match one of my favorite outfits.

stretching Jacob's legs

he did well sitting like this for about 10 minutes

Jacob was really alert on Christmas morning. He seemed like he understood what was going on. He was very happy.

Christmas morning 2012

loved his new light

Had this shirt made for Jack lol he wore it with pride. This was at Celebration.

at Celebration "ice" skating Florida style bubble snow and all

Andrew Christmas morning

Hannah Christmas morning


  1. Great update! Thanks for all of the pictures. I love Jacob's "big boy" bed. It looks like it would work for our son too. (also 3 1/2 with spastic quad) I also love how you have him sitting up. Is he doing that all on his own with a tiny help from a boppy? So great! Last question, what is the harness that is holding Jacob on Christmas morning? It looks like it works well.

    1. Jacob is also 3 1/2 I LOVE the race car bed. I have thee boxspring and matress on the floor so it leaves an edge around the frame. The matress is tight enough I don't worry about him getting stuck. He is able to wiggle himself all over the bed, just can't roll over or fix himself when he gets in an uncomforable spot. He is sitting up with the help of boppy pillows. I have one that was made by fisher price years ago that I can tie around him for a little more trunk support. He likes being out of the usual equipment and it makes him work his muscles a little more. In the Christmas picture he is sitting in a Special Tomato seat. We had a tumble form and the harness did not hold him well. I LOVE the harness on the speical tomato. The #1 reason I bought it. Honestly I think I would have been just as happy with the buying the harness and using it on the Tumble Form. Size wise and where the hole placement is they are the same. The only difference is the Special tomato has an extra hold where the leg abductor is allowing a crotch stap instead of just the seat belt so the child can not arch his bottom down. That piece can be removed and not used though. You can find them on the special tomato website under replacement parts for $30ish. I keep a blog on just Jacob and all the equipment I have tried for him at